A visit to the dentist

We brought C. to her annual dental check-up and once again we left with the great news of no cavities. Despite the cleaning she needed from the dental hygienist (several teeth already sported black rims of plaque), my brushing was awarded an A+.

Of course, the credit goes mostly to the triple-headed toothbrush I use. It was recommended to me by this same dental clinic at our last visit. Here it is on the right. 

This clinic is one of only two in our city that treat the cognitively and physically disabled, but it is the only one to do that without a general anesthetic. Instead, the patient is strapped down from neck to ankle in, well, I'm afraid there is no more appropriate word - a straight jacket (with velcro straps).

C. didn't mind it a bit, remained calm and cooperative.  The staff are gentle and kind, and charge similarly. Today, the clinic's regular low fee was reduced further -  the examination was free.

In the course of hunting for a photograph of the restraint used, I discovered that its use is very controversial. I had no idea that progressive dentistry deems it archaic and cruel and favors the use of anesthetics instead.

Medical Restraint Papoose Boards, from here

But I know that for many people with disabilities, particularly epileptics, that is risky. For them, the restraint  is a safer option. Which is why I didn't bring C. to a dentist until this pro-restraint clinic opened. You can read the anti-restraint argument here. And here's an excerpt:

"Why is physical restraint still acceptable for elective dentistry in our country? As was stated in previous editorials, it is difficult for people to accept change. Until we stop this brutal, archaic practice, those traumatized children will continue to grow up into adult dental phobics who, despite full-scope dental insurance, will continue to stay away from the dentist for as long as possible until they have pain worse than what they expect the dentist will cause, and dentistry will continue to be the universally recognized symbol for fear and pain, just as it was for centuries before Drs. Wells and Morton. We now must start the process to improve anesthetic availability in dentistry for the sake of our children and grandchildren, so there will be no need for physical restraint to have a cavity filled."

Meditations on medicos and medicines

C takes her meds

Last week we had a doctor binge.

First, at our lawyers' behest, we drove with C. for three hours to an infectious diseases specialist, a potential expert witness in our lawsuit.

A brief digression: 

We are still hoping - after some twelve years - to bring a malpractice claim, probably against the Ministry of Health, for administering the MMR vaccine to C. without warning us of the risks involved. One day before the vaccination, I consulted with the two doctors who were treating C. at the time. They both assured me that the risk was no greater to her than to the general population and that I would be endangering her more by not vaccinating. We now know that according to some experts the possibility of serious side effects is higher for neurologically impaired babies. C. was more likely to suffer injury than a normal baby. In fact, she began seizing about ten days after the vaccination.

Unfortunately, the doctor we trekked to last week didn't check C. at all and spent less than ten minutes listening to us. It seemed like a colossal waste of time. The lawyers haven't even answered the email we wrote after the visit. I know this case is a long shot but, hey, how about a bit of common courtesy.

The second visit last week was to the neurologist in whose care C. has been for several years. This visit was far more uplifting than the one to the infectious diseases guy. We left with plenty of goodies in our hands:

1. A referral to a genetic test that we haven't yet done because it was expensive.
2. The decision to remove one of C.'s three medications along with instructions on how to proceed with that. The drug in question is Neurontin (a.k.a. Gabapentin) and it will take three months. Then we replace it with Valproic Acid which is apparently a terrific drug. 

We did try that briefly many years ago but the thinking now is that (a) a body's chemistry changes over time so C.'s reaction could be entirely different; and (b) the brief trial may not have been enough.  

Afterward we will probably also stop the Inovelon (Rufinamide). Neither Neurontin nor Inovelon were really helping. We had left her on them simply because the conventional wisdom used to be that removing drugs - even those that are ineffective - is liable to trigger seizures. Doctors preferred to just add new ones.  

Current thinking - I first learned this from my daughter-in-law the pharmacist - is to keep the maximum number of meds at two. Our neurologist agreed that's the optimal number.

So, for better or worse, hope is once again rearing its head. With fewer seizures and fewer drugs, perhaps C. will have a clearer head and make some progress.

P.S. In addition to C.’s drugs, we are sticking with the Modified Atkins Diet. For those whose children have epilepsy, have never tried the diet and are considering it, here [link] is the place to go.

Rethinking (upwards) what our children are capable of learning

From the newspaper report on the new Israeli program

A program called Otzmot (meaning 'strengths') at Bar Ilan University in Israel began operating this year. It offers cognitively disabled young adults a tertiary level education. It will also enable them to mingle with non-disabled students in the library and cafeteria. 

The hope is that ultimately the students with disabilities will embark on a regular BA track. Currently, the only other such initiative is at the University of Ontario.

On its face, this is utterly irrelevant to our children. 

My daughter C., signaling that she is hungry

But in discussing this project, its director, Professor Hefziba Lifschutz-Vahav inadvertently spoke to us too. She said that usually, in her society, the cognitively impaired are not challenged intellectually beyond the age of 21. At that point they are relegated to such menial jobs as dish-washing, cleaning and stuffing envelopes. This  relates to their early cognitive decline as compared to the general population. So it is considered futile to teach them when any achievements will fade so soon afterward. Also, it is presumed that they won't grasp any abstract or complicated material. 

Finally, Lifschutz-Vahav adds that this attitude is "an expression of social rejection and prejudice." You think?

But she had encouraging news:

"All the studies and projects using mediated learning have shown ....[that] because of maturity, experience, exposure to more stimuli, a mature age enables understanding of tasks that were previously absent from their behavioral repertoire. That is, developmental delay is compensated for in later years."

Meaning that many of our children, written off at, say, the ripe old age of 5, are capable of learning much more now than they could previously. 

My C., dismissed years ago by her school as unteachable, could begin to learn more easily and quickly now. I would say the sky's the limit.  

Here are three more helpful tips gleaned from the lectures I attended two weeks ago at C.'s school.  

1. You can't teach communication skills by depositing a child in front of a screen and leaving him there alone. Somebody must be there beside the child mediating. Today, for instance C. and I played hookey and I treated her to an intensive hour-long computer games session. I did lots of waiting, hugging, kissing and encouraging. By the end, she moved her hand several times onto the switch independently and after briefer intervals.
2. Lack of communication skills breeds frustration and acting out. One of the lecturers told of a deaf and blind student who began attending school at 23. Her parents had cared for her physical needs well, but had never managed to impart to her any formal means of communication. She was so violent that two brawny guards - a.k.a. the "Behavior Team" -  were positioned beside the lecturer during each therapy session. The minute the student made what they deemed a threatening move, the guards approached her. After three years at school, the young woman was employed in an accountant's office, traveling alone by public transportation, married and living independently. She was, to quote the lecturer, "a brilliant woman locked inside a baby." 
3. The lecturer said that she always tells her university students that, at any given moment in their classrooms, they must have answers to the questions "What are you teaching?" and "Why are you teaching that?" 

I would be happy if my child's teachers could handle those questions intelligently once a day.

Waiting

Every so often we need a fresh fix of "inspiration". With our children's progress either nil or minimal, caring for them can deplete our motivation.

So this week's series of lectures were a welcome treat. C.'s school has hooked up with one of the world's great centers of education for the blind and multiply-handicapped. It's been a hectic few days. Like so many at this stage of life, we are now not only caring for children and grandchildren but for ailing parents as well. So with my mother hospitalized, finding the time for the  lectures was a struggle. But my husband and I were determined to avail ourselves of this rare opportunity.

Actually, as "mere" parents, we weren't officially welcome. I chanced to notice a small announcement on the school's entrance listing the times of the lectures. They were intended for all the staff-members at C.'s school. I asked the secretary whether I could attend and she told me "no problem".

So my husband and I managed, between us, to be present for each lecture. The two lecturers, speech therapists (who were fine with our attendance, by the way) discussed and showed videos demonstrating alternative communication skills for children and adults with visual, auditory and cognitive disabilities. They deem communication a "human right" -  a novel term which resonated with me. 

They exhorted us never to give up on anybody. They said they have taught 40 and 50 year olds to communicate on higher levels than they had been their entire lives. They emphasized the importance of waiting patiently, sometimes an entire therapy session,  for the desired response.

I know I've mentioned how essential waiting is in a previous post. But after these lectures I went home and waited even longer and more patiently than ever. And C. performed better! She did her "I want to eat food" sign independently - something she hadn't been doing for some time. (The sign: index finger touches her mouth)

Not surprisingly, the waiting was the one element that amazed the audience: in C.'s school there is no waiting. And I mean none whatsoever. At two separate lectures, it was the waiting that drew comments. Otherwise, the staff exhibited little interest, few comments, and even disdain for the refreshing and enlightening information they received.

Disheartening is a gross understatement.

We complained to the administration about the exclusion of parents from these lectures. Predictably, we were fed jargon about "laying the groundwork", "future visits", "we intend to include parents at a later stage" and "this visit was hastily planned".

Next post: more of the inspiring pointers I gleaned from these lectures.